Archive for the ‘Heart Dad’ Category

Joshua needs you!

August 20, 2010

Just read that Joshua is having a difficult night. His heart rate, Blood Oxygen level, and Blood pressure all fell. Keep him in your thoughts tonight, please.

Update at 6:51 AM (10: 51 AM GMT): Joshua’s mom posted a message to her facebook page that he had “a stable night.”

You’ve come a long way, baby

August 17, 2010

Jill and Shane continue to report on Joshua. Diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), Joshua was delivered at a major medical center and was immediately sent to a Neonatal Intensive Care Unit. By contrast, I was born in a community hospital of less than 100 beds. My grandfather – only an occasional smoker – was so nervous that when I didn’t show up on time, he unwrapped the celebratory box of cigars that he planned to give away and lit up. He was chased outside (smoking was accepted almost everywhere in the mid 1960’s, but a nurse wasn’t comfortable with anyone smoking around the newborns) so he stood under a dogwood tree and smoked until he just had to find out how things were going. Then he jammed his cigar into a fork of the tree and rushed back inside. He never said anything about retrieving his cigar, so for all I know, it could still be there.

Joshua’s parents knew they would be on a roller coaster ride from the moment he arrived. I looked normal. There were no prenatal tests in the 60’s, not even a way to tell if the unborn child was a boy or a girl. Only my mother’s intuition led her to notice that something wasn’t exactly right, and she consulted a pediatrician. The pediatrician that they had used for my older brother was out of town so they talked to the New Guy.

The New Guy realized he was looking at a heart problem but wasn’t sure of the details, so he sent my parents and me to the BIG HOSPITAL 200 miles away. The Doctors at the BIG HOSPITAL figured out that I had Tricuspid Atresia… and stopped. They had never successfully treated a Tricuspid before, so they gave my folks the diagnosis and told them to take me home and enjoy the time I had. I was not long for this world.

New Guy hit the roof. BIG HOSPITAL may not be able to do anything, but he knew of places that would at least try. He found one, and to make a long story short, I was a patient of New Guy until I was 20 years old. The “new” had worn off by then, but he’s one of only two doctors to really understand what is going on inside of me – him and my current Cardiologist. I still see him around town every so often!

By contrast, Joshua was pegged as a Cardiac Kid long ago, while he was still being knit together in his mother’s womb. The moment he was born he was handed off to a skilled care unit. Their only job is to keep him stable until it is time for his repair. And while we thought 200 miles was quite a way to travel to a hospital, that’s no longer true. 200 miles is a short trip.

We’ve literally come a long way.

Surviving a Congenital Heart Defect

August 11, 2010

Karen Thurston Chavez of Broken Hearts of the Big Bend (a CHD Support Group in Tallahassee, Florida that I have had the honor of speaking to) asked me to contribute an original post to their new blog, Our Families, Our Hearts. Here’s a quick preview; click THIS LINK to be taken over to the BHBB blog to read the entire post:

To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.

Doesn’t make sense? Read the rest, it will. And be sure to put Our Families, Our Hearts on your daily reading list; Broken Hearts of the Big Bend is a wonderful support network!

We’ll meet Joshua soon!

August 8, 2010

We have a new Cardiac Kid in our Blogroll, Joshua.The link is to his mom’s blog, as officially Joshua hasn’t made his appearance yet. He’s scheduled to be here on Monday, August 16.

Joshua will be born with Hypoplastic Left Heart Syndrome (HLHS) and his Mom and Dad will be glad to finally meet him… but understandably, they are worried. Any good parent would be! As of right now his first surgery is scheduled for Thursday, August 19.

I am asking each of you to consider passing our story along to your friends, family, and churches. Either just pass our names, a little snippet of what we will be facing soon, or my blog address, his mom writes.

We can do that! In fact, we can do better than that… Everyone take a moment to head over to Joshua’s Mom’s blog and let her know that we’ll all be pulling for them.


July 27, 2010

My gift from Hypoplastic Right Hearts

An honorarium is traditionally a small gift  given to show appreciation. I had spent most of last Friday in my hotel room, trying to recover from my fall at Bush International Airport. I had slept all day (or rather tried to sleep; I had too many bumps and bruises to really get comfortable) and gotten up in the late afternoon. I wanted to try to go to the Group Dinner sponsored by Hypoplastic Right Hearts and meet some of the other members.

I almost changed my mind – the best that I could do with one hand was a pair of shorts and a T-shirt – but I decided to go anyway. People would understand, I thought, and I needed to move around. Yep, it hurt; but if I didn’t get moving and working everything out it would hurt that much worse later.

So I got my act together and went – and had a great time. Yes, we talked hearts, but only a little. Most of the talk was about life – average, mundane things. Having a defective heart can occasionally be The Elephant in the Room, a real conversation stopper. But when everyone brings their own elephant, no one else notices.

I was very surprised when I was called to the front of the room and presented with… a pair of dog tags! I had coined the phrase Heart Warrior not long after Adventures of a Funky Heart! began, and apparently the phrase has struck a chord with Heart Parents. And knowing that no warrior enters the fray without his dog tags, the members of Hypoplastic Right Hearts awarded me a set engraved with my name and the phrase A Heart Warrior saving the world for CHD Families.

That was really a boost, since at the moment I was feeling more than a little down. Hey, all I had managed to accomplish so far was to trip over a laptop bag and win a free trip to a local ER. Not an outstanding start at all. But my dog tags coupled with the kindness and understanding of nearly everyone I met got me back in the right frame of mind.

So thank you all, and a very special Thank You to Bob and Jim from Hypoplastic Right Hearts, Sheila at the Guest Services desk, and Mr. Cecil Adams, Night Manager of the Hyatt Regency Houston.

Teach your children well

July 24, 2010

This is the text of my July 24, 2010, presentation to Hearts Re-United 2010 in Houston, Texas:

My name is Steve Catoe and I was born in 1966 with Tricuspid Atresia. I had the Classic Glen Shunt operation done at Johns Hopkins Hospital in February of 1967, and I had a Blalock-Taussig at the University of Alabama at Birmingham in 1977. In 1988 I was back in Alabama to have the Fontan. I began to bleed badly when they cracked my breastbone and needed 20 units of blood. They were not able to do the surgery, but I still got all the incision pain and the recovery time, free of charge!

I’ve been asked to speak to you about some of the challenges of living with a Congenital Heart Defect. There are so many of each that I can only touch on a few. One thing we develop is a good sense of humor. When I was a little boy a common question I got asked was “How did you get so blue?” Rather than try to explain Cyanosis – and at that age, I wasn’t 100% sure how to explain it – a funny canned answer usually worked just as well. Friends and neighbors got to hear all about my love of grape popsicles and bubble gum. As I got older, it was my personal mission in life to give the craziest answer I could think of. I told one guy that I had been pouring grape Kool-Aid into the school swimming pool as an April Fool’s joke, and he believed me. We didn’t even have a pool… and it wasn’t April! Just this morning while I was down in the fitness center, I pulled off my sweaty t-shirt and replaced it with a dry one. A fellow on the treadmill said “HEY! Did you know that you have scars on your chest?” I just looked down in shock and said “Where did those come from?!?!”

When you have a heart defect, your daily energy level is going to feel like a roller coaster ride. Every day, I plan to feel on top of the world. But like the song says, “Some days you’re the windshield, and some days you’re the bug.” On those days you learn how to fake it until you make it. Karen McNalty, the woman who created the Adult Congenital Heart Association, had a trick. She’d stop and smell the roses, look at the sunset, or admire the scenery. You’d think Karen was a real nature lover. But what she was doing was taking a few moments to rest. I’ve pulled the Karen McNalty trick many times.

I used to work at a museum that rented out our meeting room, and quite often we had to set up a dozen or more large round tables. I didn’t see any reason to carry or drag those tables, not when I could kick them up on their edge and roll them like a wheel. And if I sang a few bars of “Rollin’ on the River” while I was doing it, everyone would think I was crazy, not sick.

In the 1930’s radio show The Shadow always asked “Who knows what evil lurks in the hearts of men?” The Cardiologist knows! Some of the most intelligent people in medicine choose to work in Cardiology and if you have a heart defect, you get to meet them! I see an Adult Congenital Cardiologist at Emory University in Atlanta, and not only do I have him in my corner, I have his partner and all their nurses at my back. And they are my Weapon of Choice. Because when I have to fight my heart defect, I do not fight fair!

A few months ago I attended a speech given by a retired doctor with Tetralogy of Fallot. He said “One day we’ll live to be 80, 90, or even 100 years old.” We’re well on our way to that goal – just about 95% of all children having heart surgery grow up, and for the first time, Adults with CHD outnumber the Cardiac Kids.

I’m 43 years old, and I have seen some amazing changes in Cardiology. My first EKG took more than an hour and was printed out on a long roll of cash register tape. My second surgery took place before anyone had thought of a cough bear, so twice a day two nurses would come into your room, sit you up, and pound on your back until you coughed lung gunk into a cup. And this was not long after surgery! I’ve never had an MRI before an operation because MRIs didn’t exist. And if I have seen all this, can you imagine what is coming next?

A Left Ventricle Assistance Device is a small pump that can be connected to a failing heart and keep it going longer, hopefully giving enough time to find a good heart for transplant. And some models are being tested as “destination therapy.” What does that mean? Destination Therapy means that the pump can be the last step – no need for a transplant. These devices are powered by a battery pack outside of the body, and the batteries are getting smaller. But Robert Jarvick is working on an Assistance Device with no battery pack at all. It gets its power through the use of tiny magnets.

At Wake Forest University and in Pittsburgh, two different teams of scientists are growing organs in the lab. The Wake Forest team has actually grown bladders in the lab and implanted them into humans as transplant organs. And since the patient is the source of the cells they use, there is no chance of rejection. As far as the immune system is concerned, that bladder is original equipment. They’re also working on heart valves and blood vessels.

Surgical techniques are improving, too. My 1967 operation was the Glenn Shunt. A lot of your children also have the Glenn, but mine is the original version that only sends blood to the right lung. Today’s Glenn sends blood to both lungs and reduces the strain on the right lung. The Fontan didn’t provide the results that doctors were looking for, so the operation was redesigned – twice. Does anyone remember the Blalock-Hanlon Shunt? That was the operation used when you had to open the heart and create an ASD, and that was done as part of my first operation . It’s still around, in the back of musty old textbooks. But the majority of ASDs are created by Catheter now and the procedure is much easier on the patient.

With the proper level of care Cardiac Kids can have a long life. But what good will that life be if they live in fear, if they run and hide, or if they say “I can’t, I have a bad heart.”?

Teach your Heart Child to embrace life, enjoy it, and make the most of it. Teach them the self confidence to find a way to complete a task even if it isn’t the accepted way. Be careful, but don’t be scared.

And teach them that every heart deserves to live a lifetime.

Heading for Houston!

July 20, 2010

Getting my plans together today to travel to Houston, Texas, for Hearts Re-United 2010! Hearts Re-United is a Congenital Heart Defect (CHD) weekend conference sponsored by Hypoplastic Right Hearts. Hypoplastic Right Hearts is a national CHD Support Group offering support for Heart Defects that affect the right side of the heart.

Our hotel is going to be the Hyatt Regency Houston, but the conference meetings won’t be held there.  We’ll meet Friday at the Houston Children’s Museum and on Saturday at the Houston Downtown Aquarium. At each location the parents and adults will be in the meeting rooms “talkin’ ’bout hearts” while the children are chaperoned in the exhibit areas.

I’ll be liveblogging both Friday and Saturday if possible – Not only do I have a new laptop (which I am still trying to figure out!) but also Wi-Fi access is limited in both locations. Plan B is to take good notes and post when I return to the hotel, but hopefully I can blog the meeting as they occur. Also I will be speaking on Saturday, and I will post the text of my presentation as soon as possible.

I’ll have to pace myself a little more than usual – hot and humid weather can be rough on a CHDer, so you have to take it a little easy. But with good planning and a good hat, the heat can be overcome. But be careful…. there is a fine line between overcoming the heat and letting the heat overcome you! Hopefully no one will have that problem!

I’ll get to meet a lot of Cardiac Kids and their parents while in Houston and I’m really looking forward to it! See all of you soon!

I’ll be there Thursday night;

How to give a baby an EKG

July 19, 2010

I was at Emory University Hospital for my checkup last year and a few moments before had been “strapped” to the Electrocardiogram, also known as the EKG machine. Really, it is called the ECG… EKG is from the original German name, which isn’t used that much anymore.

And they don’t actually use straps to hold the electrodes on you anymore. They did, in the 1970’s… I’ve been EKG’ed with sticky pads, straps, and for a while they attached the electrodes with little red suction cups. Those didn’t work out so well: they would often release from your skin with a “pop!” and when they came off in the middle of the test, the test was stopped and they had to start over from the beginning. A friend of mine commented that when they used the suction cups you always looked as if  you were covered in hickeys, but hadn’t been kissing anybody!

So I was getting my EKG done at Emory when the doctor stuck his head in just to say hi, and we were carrying on a conversation. The person who is being scanned is supposed to be still, and here I was talking with the doctor. Finally the EKG Tech rolled her eyes and said “Ya’ll Hush!”

We hushed! Both the Cardiologist and I looked a little embarrassed. I started to mumble an apology but I got THE LOOK from the tech. I always thought that only your momma or your girlfriend/wife could give you The Look.

You are supposed to be still and quiet when they do an EKG test on you, so you don’t affect the results of the test. Back in the mid 1960’s when I was born, there were a few other rules, too. You had to be quiet and not move; no one could touch you because the technology was still pretty fragile – touching the patient was thought to affect the test. And the EKG machines of the time were so slow that a test took about an hour. Following those guidelines – be still, be quiet, don’t touch the patient, the test will take about an hour – let’s see you give a baby an EKG.

Say what?

From what I have been told, doing an EKG on a baby could make a group of highly competent doctors look like the Keystone Kops. But someone at my local community hospital had figured it out, and gave my parents the best advice on how to make sure I was able to undergo the EKG: Don’t feed me.

He told my parents not to feed me that day, or if I had an afternoon appointment, feed me just a little in the morning. Then when it was time to do the EKG, hold my bottle just above my head and then feed me. As predicted, I was much too interested in food to think about moving around! And by standing beside the table and holding the bottle above my head, no one was breaking the “don’t touch” rule.

When you think of “Advances in Medicine”, you often think of new drugs, new surgeries, new technology. Big inventions that get your name in medical journals. But even little ideas – like how to give a baby an EKG exam, for example – help too!

Three Ghosts

July 14, 2010

The Ghost of Heart Defects past….

I am beginning to feel a little better about him now, but he is still on the critical list….He will have to be operated on again, but unless it is a case of having to have the surgery as soon as possible, it should be several years. We have been here a long time and it seems like we have a long time to go. Keep writing when you get a chance because it does us good to get mail from home. (Copied from a letter to my grandparents from my parents, February, 1967)

The Ghost of Heart Defects present….

Things with Isaac’s recovery have gone very well. In April, his cardiologist told us that Isaac was doing great and for the first time he told us that Isaac had “no restrictions”. I couldn’t believe it… I could go on all night raving about how wonderful he is, but the real point of this is to let all of the other heart families out there know that there is hope for your child as well. Isaac only uses 1/2 of his heart since his Fontan and yet no one even knows he is sick. (Copied with permission from the blog of a Heart Mom, July 2010)

The Ghost of Heart Defects yet to come…

It was amazing, Dad. Little Freddy was so blue when he came out. They slapped him on the bottom and he didn’t really cry, he just gasped for breath. They strapped him down to this little board – strapped him down so tight that he couldn’t move – and the first thing they did was jab a needle right into his chest. That made him pretty mad, and it didn’t do me any good either. If that wasn’t bad enough, they followed that up with another injection, and they put Freddy’s umbilical cord in a sterile container and one doctor left the room with it. They told me later that the first injection was stem cells, and they injected them directly into the heart. The next injection was either genes or entire cells, I’m not sure which, but the doctor called it “NRG1”. They say that the stem cells will repair his heart very slowly, and the NRG1 will help speed things up. They say that Freddy is going to need a heart valve, so they took his umbilical cord. They will harvest the stem cells there and build one in the lab for him. And when they replace it, the doctors won’t cut him open – they will put the valve on the end of a little tube, and push that tube through his blood vessels to his heart. Then they will just pop it into place. (E-mail that will hopefully be sent at some time in the future; all of these technologies are being developed today.)

The Ol’ Man

July 12, 2010

When I head to Houston, I’m going to be carrying all new gear!

Sorry, no Greater Regional Memorial Hospital has decided to sponsor the Funky Heart. (Well, no hospital or other organization has offered yet… maybe someday!) The reason is a little more mundane than that:  I’m getting older, and my carry-on is getting heavier.

As far as I know, I am the second oldest living person with Tricuspid Atresia. My Cardiologist told me that I was his oldest TA patient a couple of years ago, then I met a group of other Tricuspids at the Adult Congenital Heart Association’s national convention in Philadelphia. Most of those people were in their 30’s – except for Pam, who is *AHEM* years older than me. (I’m not stupid, I know you don’t reveal a woman’s age without her permission!) So at 43 years old, I think I’m the second oldest person there is with this “fatal” disease.

But my laptop seems to be getting heavier and heavier with every step. It’s a good machine, it just has a few years on it and it weighs in at about five to six pounds. And my computer case is just that, a case, and there isn’t much room for my pills. My ticket and flight schedule – all the paperwork associated with a trip – fit in a folder that slides into the case easily, but my pill containers barely fit, especilly if it is a longer trip. And the Eleventh Commandment states, Thou shalt not pack thy medicine in thy checked luggage; lest thy bag go to Detroit while thy go to Denver. So I wouldn’t mind a new laptop case, either.

The carrying case came first; I got a Swissgear ScanSmart bag. Instead of a case, the ScanSmart is a backpack – it’s bigger and deeper and has more storage space. And it is light, too! I would highly recommend this bag – you don’t even have to take the laptop out of the ScanSmart when you go through airport security. The Transportation Security Authority (TSA) says that you don’t have to remove your laptop IF the laptop is isolated so that the x-ray unit can “see” above and below the laptop. Open a zipper on the ScanSmart and it lies flat like a clamshell; one side contains all your gear and the other side contains  the computer – and nothing else. No problem at all for the TSA. (Of course, they do reserve the right to search any package or bag. Hopefully mine will make it through without any questions!)

And next came the computer – I had to look a little bit before I found the one I wanted. I finally purchased a Toshiba Netbook that weighs two and a half pounds. It works great, but I don’t know all the little tricks and shortcuts that make it work better just yet. That has me a little worried – I hope to be blogging from the conference in Houston, not reading the instruction manual!

Of course, getting older is a good problem to have and something I am looking forward to. If events had occurred as some top doctors had predicted, I would be a 12 inch long grave in the cemetery behind my church, long forgotten by just about everyone.

I’m really looking forward to my impending “Ol’ Man!” status!